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Long-term Paxil withdrawal

I was taken off Paxil nearly three years ago by a psychiatrist, who used about a six week taper.  At first I suffered a lot of disorientation and insomnia, then it evolved into intense depression, constant anxiety, and worse anxiety attacks.  I was put on the drug for anxiety attacks.  It's three years later and I'm still in constant anxiety, my phobias are way worse, and deeply depressed, so I ended up with three problems where I was only being originally treated for one.  My psychiatrist didn't or refused to recognize this as Paxil withdrawal, but eventually I was able to go on the Net and find out what it was, but I can't find anyone who can tell me what to do about such a persistent problem.  I'm now on Lexapro, but it hasn't helped much.  I know now that if my psychiatrist had put me right back on Paxil and tapered more slowly I might have done much better, but he didn't offer that alternative or ever explain Paxil withdrawal to me, so here I am.  Do you know of anyone I can talk to about this, who might have researched this problem; I haven't been able to find anyone, and several practitioners have refused to see me at all, probably because I lack income or they don't want to buck the pharmaceutical industry.  I really don't know.  I've lost three years of my life already.  How do I find someone who truly knows how to help?  The three psychiatrists I've seen are truly clueless about the drugs they prescribe.
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242532 tn?1269550379
MEDICAL PROFESSIONAL
It's impossible to just draw a straight cause and effect line between the withdrawal and your symptoms...peoples lives change and their circumstances create more or less stress, which leads to both anxiety and depression, so how do you know it is the drug withdrawal, rather than your stress causing these symptoms...a good  talk therapist can help you sort this out so don't stay so fixed on the withdrawal explanation until you have thought this through carefully with a professional.
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Avatar universal
No, there were no intervening events that would have increased my stress, I wasn't feeling depressed.  In fact, things were going pretty well other than the side effects of Paxil changing and increasing.  I have a talk therapist, thank you, but she's lost on how to help.  Sometimes you have to listen to the patient; I lived with the panic attacks for which I was put on Paxil a long time before I went on it, and I know myself well.  I'm fifty six years old now, I know who I am, or was.  It is the Paxil; I suffered what so many have described, only it hasn't gone away.  So I repeat, are there any doctors who have an expertise with this?  There has to be somebody who's studied Paxil withdrawal due to the extremely large number of people who have suffered from it.  I just can't find anyone.  
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Avatar universal
One other thing -- my mind doesn't work very well since I went off Paxil, so forgive me for not being able to finish my thought.  What I'm suffering now is incredibly intense; I've never suffered anything remotely like this.  All the years I've had panic attacks I was fine as long as I wasn't doing something that triggered one; now I'm in intense anxiety all the time for no reason at all.  When there is a reason, I practically implode and explode.  The panic attacks are worse than they were before I went on Paxil, and I never had such a morbid depression, ever.  These are new things without any trigger other than following discontinuation from Paxil.  I know I'm probably an extreme case, or at least I hope so for others' sakes.  
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604266 tn?1236358985
I'm not expert in psychotropics of any kind except for personal use, but it seems to me paxil withdrawl would be over by now and while someone is tapering it is common for symptoms to become more severe for a number of reasons like what you were being treated for origionally and the added sress of withdraw off the medication not knowing what to expect..things of that nature. But after three years your body is free and clear of any paxil and the effects of it have long disapeared and I would imagine what your experiencing now (as only an unofficial thought) is an increase in your anxiety sympoms and an includion of depression that may have been there before or may have developed within these past three years.
The problem with medications, is that they are never the lone answer. They can help symptoms but if your not including therapy then when you get taken off teh meds all the issues are still there.

I may have missed whether your'e in therapy or not but if not I agree that you may really benefit from finding a good therapist that you can trust to talk to. You may have new triggers that you don't realize and there may be something you don't see as depressing you.

As the doc abocve said things change, especially in three years time and in my opinion (because it's happened to me) there may be things your not seeing like new triggers for anxiety and depression triggers. Not to mention living in a state of constant anxiety can cause anyone to feel depressed and hopeless especially if your having a hard time finding help.

If you sit down with a good therapist over time you may be able to recognize things that you haven't before.
Like for instance, since starting therapy, I've realized things about myself and my anxiety triggers I never even realized. So when I thought a panic attack came out of nowhere it was because I had been triggered earlier and my body had a delayed reaction to the trigger when I was somewhere safe. But that is just me...and as I said you may find out tons about yourself that you didn't realize and can't see because you have a view from the inside looking out and a therapist can help you see a view from the outside looking in when you start to talk about things.

But as for what sounds like devestating anxiety and depression, I'm not so sure after three years the paxil withdrawl would still be having an effect on you ohysically or psychologically. I hope some of this helpped.

And besides many different kinds of therapist there are also many different kinds of psychiatrists who may be able to also help along with therapy.
Uusally psychiatrists won't treat someone unless they're recieving therapy of some kind. But I didn't read where your from..that's here in america.

I hope you can find some help. I know how devestating anxiety can be and how trapped it can make you feel. If you ever want to talk you can always PM me anytime. I understand what your going through right now (well the anxiety/depression..not the paxil as I've never taken it)

Amph

PS- If your on something right now you don't feel is working and you've given it a good amount of time (like a month or two) always speak up and let them know. There are tons of available options medicationally for anxiety/depression. And it's great because many of the new AD's work for both.
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Avatar universal
Hi Paxiled
I read earlier that you still had concerns, even after the doctors response.
(I haven't read Amph's response so hopefully I'm not going to repeat what she says).

It sounds like your reaction may have been due to withdrawal.  I think it might have been more appropriate to have increased the dose again.

I wonder what his motivation was for taking you off it?

I read you have a talk T, which is good, and your comment about sometimes having to listen to the patient.  I think a T should always listen to what their patient has to say.  I also think there are times, when we as patients, need to listen to our T's.
Sometimes we're not ready to hear what is being said and we need a lot of reassurance and validation.  It is only once we feel validated and understood that we'll be receptive to what they have to say.
Sometimes we need to trust our T's and let them help us.  This is not always easy.
If you feel your T is not helping are you able to talk to her about your treatment and your ability to work together.  Do you have the option of trying another T?
I was just working this out.  I have seen a total of eight T's.  Nine if I include the head of the psychology department who was providing support during a transition of T's.  It sounds like a lot.  Some are because I changed location and some left themselves.  Out of all those T's, I had one really good one who I made progress with, several mediocre ones and the rest were rubbish (didn't help at all, or not much).
You need to find a T who you feel comfortable talking too and who you can work with.  I had a really strong working relationship with my last T and I really miss that now.

It's possible the phobias feel worse because the medication managed the symptoms for so long.
I have symptoms that at times feel worse after having taken buspirone.
The depression could have arisen from your experiencing of the symptoms and the lack of sleep.  Our negative thoughts and perceptions don't help either.

You sound a little like me.  I initially started out with a diagnosis of depression and now my history reads something like: severe depression with psychotic features, anxiety disorder, anxiety nos, gad, moderate social phobia, eating disorder nos, ocd, ocpd, bpd, complicated adjustment disorder, severe chronic dysthymia and other miscellaneous stuff like perfectionism, symptoms of binge drinking (if one glass of wine when I feel like **** constitutes binge drinking because I don't otherwise drink) and ptsd, etc, etc.
I blame all these on hospitalization.  Similar to what you're doing with withdrawal.  It's all just like a domino effect.  Sometimes this can leave us feeling like we're constantly being re-victimized by health professionals and treatments.

I think your doctor made a mistake.  Many people have found this particular medication extremely difficult to stop.  I've seen a documentary on this and it's not pretty.  I feel for the people going through this.
Maybe the side-effects weren't that well documented at the time??

I think the symptoms are complications from the withdrawal and not the actual withdrawal itself.  If you stopped taking this med it will be out of your system.
I get a bit paranoid about medications still affecting me, but I'm told they aren't.
(Perhaps I have reason to be concerned after having taken 2000mg of prozac, 400 mg of ciprimil along with other meds).  I guess the damage is done but the drugs are definitely out of our systems.

Perhaps you need your meds reviewed.  Or if things have changed another psych assessment.

I don't think it's necessary to find someone who has researched this.  I think a skilled and empathetic T would suffice.  I think you've been traumatized by your experience and you need to talk this through.  I still haven't opened up and spoken about my experiences within the mhs.  I think it's important that we do talk about our experiences though and how we feel about them.  It's important that we do.

I've lost many more.  I became depressed in 2000, was referred for a psych assessment in 2001, was sectioned in 2002.  With the exception of 11 months of excellent therapy, I've just been toyed with.  If I wasn't so sick and traumatized I may have done something about this.  Actually, the mhs are still messing with me and while I still feel extremely fragile and vulnerable, after some good therapy I know not to accept inappropriate therapy from an equally inappropriate and inexperienced T.

I can feel quite bitter and resentful that issues or behaviors were not identified and that preventive measures were not taken.  It can be difficult taking responsibility for things that happened in my childhood.

I sometimes feel angry about my lost years but that anger can be very destructive.  It just wastes more time, space and energy.

I always thought I was an extreme case too, and perhaps we are, but I think too many patients are adversely affected by psychiatric interventions.
I used the word iatrogenic a lot, meaning resulting unintentionally from medical treatment.  Health professionals don't like hearing that they've hurt us/ are hurting us, even if it is unintentionally.

What do you do?  You do as Dr Gould suggests and find a good talk T.

J
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Avatar universal
Thank you for your responses.  My comment about not listening to the patient was directed to Dr. Gould, not my current therapist.  She's completely at a loss what to do with me because she's never seen a case like mine.  However, I've been in talk therapy for years and it never really helped much.  Paxil did help, but the side effects became worse over time and when I returned to full time writing I just couldn't do it on the Paxil.  Because nobody told me what Paxil could do to you when you went off it, including the psychiatrist who took me off it (at my request), I had no idea what was happening until I finally got the nerve to go on the internet.  There are other stories like mine, where people never came back from the emotional issues that arose during withdrawal.  I was put on Paxil for panic attacks, not constant anxiety or acute depression, so those issues only became part of my life after I went off the Paxil.  Keep in mind, Paxil is completely out of the system in a few hours; that's one of the reasons the withdrawal is so bad.  You can go into withdrawal by just missing a dose.  I have a friend who did.  There were no other triggers, and since I've been living with the panic attacks for a very long time, I know myself well.  My therapist agrees that the constellation of symptoms I have now are probably from the Paxil, but her problem and mine is that they're so intense and so constant.  Before, as long as I wasn't doing anything that gave me a panic attack I was fine.  Now, I'm living in a panic attack.  As I said, it's an extreme case, but I have read stories of others who have had long term problems.  A great many so-called psychological problems diagnosed by psychiatrists are actually caused by medication, and the reaction is to just add more meds to contain the symptoms.  My problem is, none of these meds were developed to deal with the problems caused by medication.  I am on Lexapro now, but it hasn't helped very much, and I don't know what to do next.  I'm looking for a physician who has looked at this issue who has some clue as to what happened and what to do next, because I can't find anyone.  Psychiatrists are generally so confined in their knowledge to what pharmaceutical companies tell them; they lack curiosity and scientific skepticism.  I need a psychiatrist who has gone beyond that to independent thinking, and I was hoping Dr. Gould might know of someone who has gotten deeply into this.  

Here's the thing:  I know what happened to me, and so does my wife.  I was one person, then I went off Paxil and I became another.  I just want to get back, knowing that back is still a person who gets panic attacks.  I just want this extra terror eliminated and don't how to undo what Paxil did.  Maybe the only solution, even after all this time, is to go back on the drug; certainly I've learned that's what my psychiatrist should have done when it first started, but he was unprepared professionally.  Therapy only works when you are able to work with it, and right now that's extremely unlikely given how much my mind has changed.  I am trying, but I can't even meditate anymore, I can't turn the anxiety and depression off, and there's nothing going on to be concerned that much about.  It's just weird, but sometimes weird things happen and I need to consult with someone who has the curiosity to actually understand these drugs and not just quote the PDR.
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Avatar universal
I think Dr Gould was listening.  I think if you take a step back or away from the issue you would see this.  I think the doctor is looking at this many steps ahead of where you are at the moment.  Once you work through some of the issues you will see this.
Been there, done that.  We need to do things in our own time though.  Forcing or rushing things can set us back.

Medication is rarely the long-term solution.  It can help manage symptoms but it doesn't make the problem go away.

Some doctors elect to split medication dosages so that levels remain fairly constant.
The doctor did this for me with buspirone (anti-anxiety med).  Instead of 2 x 15 mg he opted for 3 x 10mg.

Yes, doctors have been known to prescribe additional meds to counter-act some of the adverse side-effects.  It is risk vs benefit.

Some doctors appear pretty blase about their prescribing practices.
Large pharmaceutical companies probably do influence some physicians.  

I think you're in denial.  I don't think you're ready to accept things now.  Accept that this medication may not have caused all your issues.  It is far easier to attribute negative things to something other than yourself.  I've been through this and it hurts and it is hard.

I personally think you're wasting energy on something that will not benefit you.  I think you should see a good doctor and start from scratch.  Things have changed, your situation has changed.

No, you don't want to go back.  You are going through this for a reason.  Working through it will make you a stronger person.  And hopefully a healthier one too.

You undo it by addressing your current issues and by accepting things as they are now.  Don't keep looking back.  This is not helpful.

I expect it is the anxiety that is making it feel changed.  Do you have any good days?

Nothing to be worried about?  You have concerns over your mental health.  The fact that you feel changed.  You harbor a lot of anger about the medication.

True, strange things have been known to happen.  I don't believe this is one of them.  I believe you're so caught up in this that you can't see the forest for the trees.

I think you should see a doctor (not a specialist in paxil withdrawal) and get this sorted.  I think many doctors would be able to help you if only you let them.

I see you making similar mistakes to myself and it is such a waste of time and energy.  It is better to invest those resources into getting well.

J
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Avatar universal
J, whoever you are, you know nothing about my situation, you're not even reading what I wrote.  I have seen doctors, I am seeing a therapist, I'm doing everything you suggest.  What you don't understand is that my problem isn't the problem I had, for which I was prescribed Paxil in the first place, and which I have had for a very long time.  What I have now began during the Paxil withdrawal and hasn't gone away.  None of the doctors I've seen know what to do.  Read what people write, not just what you want to hear that matches your own experiences.  People have different experiences.  I feel for your own problems, but you don't seem to feel for anyone else's, just trying to generalize your problem to everyone.  We don't all have the same situation.  Please, read what I wrote, you seem to be having a conversation with yourself, not with me and who I am.  You seem to discredit me as a reasoning human being who can make determinations.  Also, go online and read the reports of people who have gone off Paxil.  Many of them have also had long term problems.  Drugs can and do cause problems that are not related to who we are or were.  Do you realize how many people die each year just from aspirin?  Drugs are a risk; I took it, but without knowing what the consequences could be because the manufacturer hid that information until they lost in court.  I know my original issues are still there, but this new stuff is truly bizarre, and no psychiatrist or psychologist or physician has yet been able to diagnose it.  I wanted Dr. Gould to recommend someone who is an expert, just as Ted Kennedy went to the one doctor in the country who knew how to do a special operation.  I appreciate you're wanting to help, but first you must learn to read and listen.  You are ignoring completely what I wrote, just as Dr. Gould did.  I don't say this in anger at you, I truly appreciate your kindness and desire to help.  But remember again, your problems aren't mine and mine aren't yours.  
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Avatar universal
I have read what you've written and I have heard what you've said.  At least, I feel I've heard what you've been saying.

That's a fair comment.  You're correct.  I do often use my own experiences as a reference point.  I take little bits and pieces of my life experiences to try and help me understand.  My life experiences or perceptions will never be exactly the same as someone else's though.  I accept that.  
I think there are laws that apply and I don't think we exist too far from those.  We are all human and we all have general basic needs.

I think you're intelligent but I think you have some irrational and illogical thoughts.  I think your judgment is being clouded by your anxiety around your own issues.  I think you lack insight into this.

Life is a risk too.  Driving is a risk.  Walking is a risk.  Discussing our thoughts and feelings is a risk.

I agree, specialists in the field do hide information and have been known to mislead the public.

I don't see how your issues of depression, anxiety and phobias are different.  Many people experience these.  Any doctor, psychiatrist, psychologist should be able to diagnose these.  Even some lay people could possibly identify these disorders.

I don't believe you are listening either.

Again, you're absolutely right.  Everybody is different and everybody needs to follow their own process to achieve wellness.

I'm sorry for not trusting you and your understanding of both yourself and your situation.  Of course you need to do what feels right for you at this time.

Perhaps if you were to continue searching you will find the person and thing you are looking for.  I believe it is a thing.  Something this person will be able to offer you.

Good luck and best wishes
J
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Avatar universal
This is not about paxil but about your comments concerning myself.
I'd be interested to hear your feedback.


I was thinking about this a little, earlier.  I actually feel really insecure about posting and your comments seem to resonate with some concerns I've had.  At times I feel my posts may come across as me being narcissistic and/ or controlling.
These are not things I set out to do but that may occur due to my own mh issues.
I feel I write lots and perhaps this is why I also inject my own thoughts, feelings and experiences into posts and that is because I lack a sense of self and I am ignorant about personal boundaries and limits.
Perhaps while answering people's posts I am trying to find myself.
Perhaps by over-identifying with the parts that seem familiar to me I am neglecting other important aspects.  I don't think I dismiss all aspects out of hand though.  I think I hear them, or at least I try too.  I feel I can see things from several perspectives but I also know I miss an awful lot due to my limited life experiences.
Perhaps I am playing it safe by sticking to what I know based on my own experiences.

While I sometimes find it difficult hearing personal criticisms, and I can sometimes perceive this as a personal attack, I really appreciate your comments.

I haven't been in therapy for five months and have missed approximately 60 therapy sessions (the number of sessions I would have had if in therapy) and have missed the challenges to understand myself better and to change my cognition's and behaviors.

Do you have any advice or suggestions on how I may better understand you or others and how I could communicate this?
Do I need to be more humble and acknowledge I don't know, and therefore can't understand, a person's story?  A post is like a single photograph.  It can convey a lot but is also very limited.  Do I come across as being that arrogant and egotistical that I think I know everything?  I am actually incredibly insecure about most things.  Even my sense of self-worth and right to life.   Perhaps this is a defense I use to protect myself.  Control to defend against vulnerability.

Do I need to not talk about myself?  Do you think this invalidates the person I am responding too?  It is never my intention to belittle or judge anyone or their experience.

I may have asked the wrong questions but I'm happy to listen to any thoughts or feelings you may have.  That doesn't mean I have to like them or even change who I am.

It was never my intention to hurt you or imply I thought you were stupid.  I wouldn't be asking for your advice if I didn't respect you.

Thank you for your honesty.

J
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Avatar universal
Just keep on being you.  My reaction, or anyone else's, should help educate us all, but should never determine who we are or whether we like ourselves.  I'm not angry at you for sharing what you think, I'm just open about dialogue -- I will answer if I think someone has misunderstood me.  I'm not a very mainstream thinker -- maybe because I'm a writer, maybe just because I am who I am.  You just be who you are, and if someone disagrees, as I did, that's a beginning of the conversation, not the end.  I'm obviously pretty frustrated after going through this for so long and not being able to get professionals like Dr. Gould to take me seriously, so when I got so much flack from fellow sufferers, it took me back and I felt it necessary to respond.  It is not necessary for you to agree with me or anyone else because of that.  I don't think you should judge yourself, but that is the nature of the disease or whatever it is we have, we do judge ourselves and put a lot of pressure on ourselves.  Personally, I like a good discussion, and people will disagree, but that doesn't define us.  It just expresses a piece of us.  

I'm probably a bit older than most who use these boards -- I never have before.  I'm nearly 56, and have lived with this for a long time.  I know how quickly and radically I changed, and the only thing different in my life was going off Paxil.  I also read thousands of other accounts on various message boards, though frankly it makes me nervous in my current state to read them.  I had to do this because my health plan psychiatrist claimed ignorance and left me hanging and I didn't know what was happening to me until it was too late to follow the recommended protocols.  Now I'm completely lost in this weird world of constant anxiety, memory loss, loss of my sense of humor, disorientation, devastating depression, none of which I had until I went off Paxil, ever.  I did have intermittent depression, always triggered by a bad break-up and nothing else and I haven't had one for a long time, in fact I'm married to a woman I've been with for thirteen years, and the panic attacks, which is the ailment that brought me to Paxil because therapy hadn't worked (it actually turns out to have a pretty low success rate, but that doesn't mean we should stop trying).  It's also frustrating because most of the research is on depression, not panic, with these meds.  Anyway, that's how I know it was the Paxil and not some horrible event.  No such event occurred, and the deterioration to new states of being happened soon after going off the Paxil.  I think I'm an extreme and rare case, so I wouldn't generalize it, I'd just like to find someone who knows where to go from here.  Dr. Gould punted instead of answering my question, so I have to look elsewhere.  But don't let me or anyone else define you or tell you what to say; we both listened to one another and grew a little bit from it but a frank exchange doesn't make anyone a bad person or any other kind of person except a courageous one willing to get out there and express an opinion.  Be good to yourself.
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Avatar universal
Thank you!
I was wondering that if I was abusing the forum by posting about myself how could I post at all.  I was a little afraid you would come back and say you should do a, b and c.  That would have been fine but ultimately that is not who I am.
This and other forums are a lifeline for me and I am very dependent on them.

I do hear what you're saying.  I think recovery will be a journey, an adventure almost, for you.

I believe Dr Gould did answer your question.  I too am an independent thinker (when I can think) and I believe I would confront or challenge him if I disagreed with something he wrote.  I don't feel like just another sheep.  Or blind man.

It sounds like you want an expert in paxil withdrawal.  You've tried several psychiatrists.  What about psychologists studying the side-effects of this drug?  You need to go back to the grass roots almost.  Perhaps look for places where the drug was trialled.  Once there then you can discern the appropriate person to talk too.
Do you have a copy of the information that came with the medication?  This usually has details on it.  Maybe the manufacturer could direct you to someone.
Perhaps you could start at the top with the drug company and work backwards.
It seems like starting at the bottom will be too time-consuming and futile.  If you have the confidence and are well enough try starting at the top.
For me, if I were wanting this information, I would approach someone from one of our two medical schools.  (Psychology, psychiatry, research departments).
I don't know if a physicians desk reference would have anything in it.
What about the people who published the articles on the side-effects??
They are heaps of different places you could try looking.

I hope I'm not doing you a disservice by encouraging you.  :)

J
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Avatar universal
I did try what you suggest, but had no success.  My doctors are in a practice connected with a medical school, but claimed not to be able to find anyone.  Calls to medical schools in the area went unheeded.  I did get a reference from my primary care physician through a professor, but the psychiatrist he sent me to couldn't help -- had no expertise in the area after saying he did.  He did give me the most thorough diagnosis and listening I've ever had!  But he had nothing to add but describing what I already knew I was going through.  And I contacted GlaxoSmithKline, but they refused to help -- said they could only speak to professionals, but they refused to speak to them, too.  They've been sued so many times, they don't want to reveal their research because the only time someone did (a psychiatrist in England during the initial lawsuit) it turned out they knew all about this but didn't tell anyone.  I'm afraid I've been flailing about, and hoped I'd get a response here but same old same old.  Maybe I'll try to question him again, but my guess is he doesn't want anything to do with it on my terms -- I've already done everything he suggested, with befuddled practitioners as a result.  Somebody's got to suffer the terrible consequences of these drugs, whether it's the few who die of liver damage or kidney damage or the thousands upon thousands who've died from simple aspirin.  It's the unfortunate way we learn.  First we kill animals, then we kill people, because we just don't really know what these drugs will do in long-term use.  We find out after a few years.  Yet I wouldn't ban Paxil -- it still is probably the best drug for some people whatever the costs, maybe even for me.  I just can't seem to find out.  Appreciate your and anybody else's help on how to find out such things -- my initiative was destroyed with the incredible anxiety and depression that has followed discontinuation of Paxil.  And keep writing!  Nothing you say is malicious, I just didn't agree.  No biggie about that!
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Avatar universal
I did try what you suggest, but had no success.  My doctors are in a practice connected with a medical school, but claimed not to be able to find anyone.  Calls to medical schools in the area went unheeded.  I did get a reference from my primary care physician through a professor, but the psychiatrist he sent me to couldn't help -- had no expertise in the area after saying he did.  He did give me the most thorough diagnosis and listening I've ever had!  But he had nothing to add but describing what I already knew I was going through.  And I contacted GlaxoSmithKline, but they refused to help -- said they could only speak to professionals, but they refused to speak to them, too.  They've been sued so many times, they don't want to reveal their research because the only time someone did (a psychiatrist in England during the initial lawsuit) it turned out they knew all about this but didn't tell anyone.  I'm afraid I've been flailing about, and hoped I'd get a response here but same old same old.  Maybe I'll try to question him again, but my guess is he doesn't want anything to do with it on my terms -- I've already done everything he suggested, with befuddled practitioners as a result.  Somebody's got to suffer the terrible consequences of these drugs, whether it's the few who die of liver damage or kidney damage or the thousands upon thousands who've died from simple aspirin.  It's the unfortunate way we learn.  First we kill animals, then we kill people, because we just don't really know what these drugs will do in long-term use.  We find out after a few years.  Yet I wouldn't ban Paxil -- it still is probably the best drug for some people whatever the costs, maybe even for me.  I just can't seem to find out.  Appreciate your and anybody else's help on how to find out such things -- my initiative was destroyed with the incredible anxiety and depression that has followed discontinuation of Paxil.  And keep writing!  Nothing you say is malicious, I just didn't agree.  No biggie about that!
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Avatar universal
I doubt the doctor would offer a different response.  You could try with specifics (I know you did this before).  Perhaps mention how important it is for you.  Perhaps ask for ways you can find the information you're seeking.

What about the bodies whom you report adverse drug events too?
A poisons center??

It can be a harsh way to learn but sometimes we do only through experiencing the consequences of our mistakes.

There was a quote I use to like, something about giving the test first, the lesson after-wards.  

I'm surprised you wouldn't ban paxil.
I was threatened with ect and I would have that banned.  I think I would need more information first though.  And I would need to see it work.  Because of its potential to be abused, and because of its adverse effects, I would have it banned.  At least until there were stronger laws around it.

You could find out by trialling it again.

I thought you'd managed to achieve a lot with your debilitating symptoms.

Do you think I could be just a little bit right?  (Can't blame me for trying).
I can't understand why you would do this to yourself when you could be addressing the issues you do have right now.
Why continue to be anxious and depressed when you could treat them now?

Dr Gould has this thing about reality.  He suggests starting and ending with reality as the basis for decision making.
If you were to start with the symptoms you're experiencing now ...

This is just a boring aside but I was told I needed radiation therapy for cancer.  I'm not thrilled with the idea and to be honest I can't be bothered with the whole process.  But, ... if I start and end with reality.  The reality is I have symptoms and I am at risk.  The end reality is that if I don't have treatment I could potentially die.
All this other miscellaneous stuff comes up, like: I'm anxious, I don't like people touching me, I'm not comfortable with my body or these interventions, I don't want to have to maintain a weight for five weeks that I'm not comfortable with, I can't see anything so how do I trust I need treatment, I'm tired, I'm depressed, how can I make a decision, my life ***** why not not treat it, treatment will interfere with and affect goals I've set.  Just on and on, no resolution, just procrastination and more stress.
The reality is that things can get much worse for me so I rang the oncologist this morning and she was going to book me in for scans and simulation next week.  

I just don't get your approach.  You're smart so why not treat the anxiety, depression, panic and phobias?  These would be amenable to most treatments.

J
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765070 tn?1384869794
I totally understand what you are going through because my son went through this when he was put on zoloft.  The pediatric psychiatrist insisted that my son had OCD and zoloft was the answer.  So she started him on this and immediately I was concerned.  I noticed his moods were horrible, he started having tics, anger, and did not sleep.  I explained this to the psych but she just uped the dose.  Every time the dose was changed the syptoms got worse.  In fact, the more he was on the med the more new problems came up.  He was now depressed and had extreme anxiety.  

The doctor did not do anything about this so I gradually weened him off of the zoloft within 3 months.  I new by doing my own research, even though I paid a psychiatrist, that he needed to be weened off very slowly or the outcome could be traumatic.

Well, he was 7 when he went off of the zoloft and finally by the age of 10 he finally is just about back to normal.  He still has a couple tics.  

When I ended up telling the dr. at our next appt. she was very upset that I had done this.  She said that I could have really harmed my child.  I told her that this med was harming him and that you did nothing about it so we, mother and father, did what was best for OUR child.  She finally realized this at the next session and since that episode, she has been a wonderful psychiatrist for my son.  If fact he no longer has the OCD diagnosis.  She removed that from his records.

I hope that this helps you and others in understanding that some of these meds cause more problems when given to someone that may not really need them at all.
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I think pediatrics is a little different as the brain is still developing.
Many psych medications carry warnings for the use in younger individuals.

You were right to discuss these symptoms with your son's psychiatrist and then when no positive changes were evident, to research and take action yourself.
It can potentially be very dangerous but in your situation it proved advantageous.
This is also about responsible parenting and knowing your child.

OCD is something that could have been worked through in therapy with your son.

Sometimes medications are used as a first resort because clinicians are just plain to lazy (and/ or under-resourced) to address the real issues.

I'm glad your son has survived this and is on the mend.

J
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J -- I guess the truth is, I'm afraid of the meds now, after what happened.  But also, it's not that I would never take something, it's that I don't trust my health plan psychiatrist because he got me into this in the first place.  The other two psychiatrists I saw on my own don't recommend a lot of meds, given both my experience with Paxil and their inability to know just how to deal with all of this.  There's been memory loss, disorientation, loss of my sense of humor, inability to enjoy things I always enjoyed, obsession with myself and my past, just so many symptoms.  It may be that the only way to get back is to go back on Paxil for the rest of my life, but that's a last resort.  I don't really know how to answer you without you having seen what happened and how fast it happened.  I decided to wait it out, but it never went away, and I don't want to live a life all drugged up.  I'm a writer, and I went off the Paxil because the new side effects were getting in my way; imagine what it would be like on four different drugs?  Just doesn't make sense to me, especially since none of them was created or used to deal with ssri withdrawal.  I'm just looking for somebody who knows something, but the only person I found is a Joseph (I think) Glanville, at least I think that's his name, who wrote a book called The Antidepressant Solution.  It's a book about what drugs do to people, and about withdrawal and how to best deal with it.  Wish I'd read it before I quit Paxil, because my psychiatrist didn't know anything about withdrawal, or claims not to.  I did try to contact the author, but he never responded either to me or one of the psychiatrists I've seen.  

Melissa:  Got to look out for yourself.  The true fact is, psychologists and psychiatrists, and doctors in general, know virtually nothing about disease and how to deal with it.  They're mostly following protocols established by pharmaceutical companies, not medicine.  Look at medicine a hundred years ago and how barbaric it was, and now think what people a hundred years from now will say about us.  And thanks for the prayer.  

And J:  I know it's hard with cancer.  It's a disease of the immune system and doctors only treat the symptoms, not the cause.  I lost my mother to cancer many years ago, and I also met a lot of long time survivors when I managed health food stores, which I did for eighteen years.  Always remember, it's not how long one lives, it's how good one feels while one is alive.  Do what makes you have the best life.  And what the hell is reality?  Life is a search for facts, not usually a discovery of any.  There's so much information and so little fact.  Doctors know little, but they can't tell us that, we need to have confidence in them to get better, so we have to tell which doctor is just a quack and which are just being positive.  There's a lot of shaman still in any good physician.
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765070 tn?1384869794
Not all medical psychiatrists or physicians, but I agree that our psychiatric system and family medical system is now based on how much money the pharmaceutical companies will give you to push their product.  I am 33 and have been on 3 different meds for post partum which occured 10 years ago.  My psychiatrist never suggest that maybe post partum is gone and you should try to stop taking it, but instead kept pushing the meds by upping the dose and changing meds.  Every new drug on the market at that time was the right drug for me, of course that was his opinion.  I do know that there are severe cases that are in need of meds, but not for mild symptoms.  

I believe that they put us at risk for many other problems when they are used too long or even taken to begin with.  I have been off of effexor for 3 weeks now.  I weaned myself off gradually not by how the doctor was telling me to do it, but by taking it into my own hands and realizing that 5 days was not enough time to go off meds that I had been on for 10 years.  I finally conquered weaning myself and finally am off of the meds.  It was hell even when I weaned myself off.  I am no longer depressed (I was when I was on the meds) and feel a little bit better.  I still have shakiness, nausiness, and dizziness.  I know that I have to get through this.  I will not go on the meds again.  I will use my faith and perserverance to conquer this.  IT is not going to be a piece of cake but through support and understanding it will happen.

to J:  Just because my son was 7 does not necessarily mean that the meds react differently in adult compared to a child.  My child is 126 lbs and 5'2, so he is bigger than some adults and most of the time they base the meds on weight.  His symptoms may be different but most drugs have the same side effects listed for adults and children.  I am sorry about the cancer, I have a very good friend that has breast cancer and ovarian cancer.  She has been such an inspiration to alot of people, due to her extremely positive attitude and does not use any meds of any kind to help her through it.  Of course, everyone is different, but she has never put any kind of meds in her body except once she used a antibiotic but otherwise has restrained from using even tylenol.  She uses natural remedies and uses a juicer to get many of the nutrients that are needed.  The doctor cannot believe how miraculous she is doing and has commented to her that he wished there were alot more people out there that did not put all the bad stuff in their body.  She struggles at times but feels that this is her way to be healthy and happy.  I just wish someone would have taught me this when I was young.  I wish the best for you and will pray for your recovery.  


Thanks.
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Avatar universal
To Paxiled

It's understandable that you would feel afraid of medication and be wary of health professionals.  Who wouldn't?
I have severe trust issues following my experiences within the mhs.  Even after five years of weekly visits (plus or minus a few weeks) to my GP, I can still lack confidence and trust in him and his ability.  I have a good relationship with him though so I can at least discuss my concerns.
Trust can be an important component in recovery and if you don't trust your doctor I would strongly recommend you see someone else.  (If that is an option).
I categorically refuse to use our psychiatric emergency team as I have no confidence in them what so ever.  This is almost the same with their out-patient clinics too.
I think I am probably better off with no support, than bad and damaging support.

You sound like me with all your symptoms.  I think the obsessing can be the worst as you just keep re-traumatizing yourself and get stuck (and then feel more anxious and depressed and unwell so feel more anxious, depressed and unwell, etc, etc).
I learned from therapy that being self-absorbed isn't that bad of a thing.  We can feel selfish and self-centered but the reality is we need to be.  When we're this unwell we need to do that in order to survive.

Some of my symptoms too seemed to have a definite origin but looking back I think they were probably pretty insidious.  Hard to say really.

My initial depressive symptoms followed a near drowning.  The psychiatrist I saw later told me I stood out because it is unusual for patients to pin-point exactly when symptoms first occur.  I don't understand the significance of this.
Perhaps it was just the straw that broke the camels back?
(It had been a difficult period for me.  Leaving work to look after mum and help my father.  Watching mum have seizures.  Seeing her stop breathing and watching her being ventilated.  Also the day of my accident I had seen a person from school.  He reminded of someone else at school who had shot himself and another person who a year later to the day had jumped off the roof of a car-park building).

I couldn't imagine what it would be like on four different meds.  It was bad enough on two (an antibiotic and an anti-inflammatory) after I had my wisdom teeth out last year.

I was going to ask you about the writing.  Have you thought about writing about your story and your experiences?  It could help give you some closure.

A lot of meds have off-label uses.  Tranquilizers or anti-convulsants, etc could potentially be used for ssri withdrawal.

There are several books out about the dangers, etc of medications.  A number of those are on prozac.

Doctors don't know what has caused it.  I associated it with the stopping of the anti-anxiety medication I was taking at the time.  It's probably an erroneous association though.  It could also be due to diet, stress, the fact we live ?200 m from pylons, exposure to chemicals.  Who knows?
I'm sorry for the loss of your mother.
I think life is more a search for meaning.  That reminds me of the title of a book.  Man's search for meaning, by Victor Frankyl.

I think we understand very little but we know a lot, doctors inclusive.
My GP always respects his limitations and occasionally reminds me, that he too is fallible.

Have you tried looking at alternate medicine?

To Melissa,

Did it not occur to you either that perhaps the post-partum depression was no longer an issue?
I guess we don't know what we don't know.
Mild symptoms can respond to medications too.  It can also be a personal preference.  Whether to take meds or not.

Medications often carry warnings for different populations.  For example, for pregnant women, for seniors, for children, for those with liver damage, etc.

Regardless of weight children's brains are still developing.

I'm sorry about your friend.

My mother's Tai Chi instructor has leukemia and she sticks to organic foods.  She also doesn't microwave stuff because of the toxins released by some packaging during heating.  She probably exposes herself to more toxins just from driving between her tai chi classes.  They're personal choices though.

Thanks for your thoughts and prayers.

J
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Avatar universal
Funny you should mention natural remedies.  I managed health food stores for 18 yrs.  That's what I intended to do when I went off the Paxil, but after I did they had the opposite effect, so I'm afraid to take them, too, except for a couple and homeopathics, which have helped some.  Ironic again, eh?  As for the toxins of driving, well, she's driving anyway, better to reduce the toxins one can.  I also eat organic food.  Besides being better for the earth and me, it tastes better -- vegetables I used to hate are nice and sweet now, grown for flavor with real seeds instead of those genetically engineered for selling purposes only.  

Writing about these only works, if it works at all, for non-writers.  For writers, it's just torment, that is, if you strive to write serious work, as I do.  I did write a novel with a character in it who went through Paxil withdrawal, but it was a novel about torture and its many forms, not about me.  I've thought about writing a memoir since I can't get my serious fiction published yet -- no market for it anymore -- but I don't know, seems boring to write about myself.  I've written three novels, but no agent.  That's why I went off the Paxil -- wasn't able to write on it very well, and it gave me insomnia,  I guess working 10 to 12 hours a day running around stores allowed me to sleep, but when I stopped I started thinking obsessively as soon as I hit the bed, then I'd sleep all afternoon.  That was the final straw with the drug, and I had my psychiatrist take me off it thinking I'd try to replace it with natural remedies that produce serotonin instead of reusing it.  But, alas, never got the chance.  As I said, sure wish somebody had warned me about withdrawal before I quit.

Your right about children, but not completely.  A lot of the problems these drugs produce in children are also produced in adults, like the suicidal thinking and violent thoughts.  And on the other hand, others have suicidal thoughts that are controlled by the drugs.  It's a pickle, damned if you do and damned if you don't.  As for there being treatments for anxiety, depression, etc., not really, not if you have them all at once.  For example, treatment for panic attacks is much more difficult if you also suffer from depression than if you don't, and the only double blind studies I've been able to find about cognitive therapy, supposedly the gold standard, show about a 30% success rate.  Same with drugs, by the way.  Which doesn't mean anyone should give up trying, just that it's damned hard.
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Avatar universal
Hi

You did mention managing health food stores in a previous post.
One of your comments reminded me of exorcisms.  That wasn't what I was referring too though.  That is something I would never recommend to anyone.
Some people report relief after acupuncture, Chinese herbal medicines, etc.
I rang the psych emergency team one day when I felt I was in crisis and the PET team member told me how when he'd been really sick he'd been divined.  Similar to divining for water.  Personally, I wasn't sure who was sicker, he or I.  Anyway, he said this person diagnosed him with Leptospirosis.
When I was in hospital I had a reaction to one of the medications I was given and was having problems breathing.  One of the nurses started doing this energy field thing on me.  I didn't think it was appropriate, nor had I consented to it.  I was somewhat relieved when the doctor came running into the room.  
Anyway, there are lots of alternative and traditional ways of healing on the market.  People just need to be extremely cautious regarding them and their claims.

In some cities and countries it is probably safer to drive than cycle, etc.  Beijing was probably a good example.

Some people choose to take precursors for certain chemicals they are said to be deficient in.  For example, L-Trotophan (excuse my spelling) for serotonin and L-Tyrosine for dopamine.

Maybe you projected elements of yourself onto your character?
Boring for whom?  The reader or the writer?

It sounds like there were issues before the medication was stopped.

I agree.  I would think it would be the other way round.  Symptoms in adults may also be experienced in children.  I'm not sure how many children are recruited for drug trials.  That's just semantics though.

Some anti-depressants are said to reduce both anxiety and depression.
Co-morbidity is probably fairly common with psych diagnoses.
I have bpd.  The % of bpd with depression is said to be 50, while the % of depression with bpd is only 15.  I'm not sure about the stats for anxiety.
I guess the important thing is diagnosing the primary issue.  It must be quite difficult at times to do this.  Easier in acute situations I expect.
With the number of disorders and the potential criteria one can present with ... I guess it makes a doctors job challenging (and interesting).

I think the onus is on finding the best treatment for us.  No two people are the same and can respond to completely different treatments.

With regards to therapy, my current preference is for psychoanalysis.

Everyone claims their therapies are successful.  CBT, DBT, CAT, TFP, etc, etc.
We just need to find something that works for us.
When you're in the right treatment it just seems to flow.  That has been my experience.  If it's a tug of war then something is wrong or going on.

J
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Avatar universal
Sounds like you've been through the wringer with your health.  Fortunately, my body has been relatively healthy.  So far, anyway.  

Oh yeah, I had issues before going off Paxil.  That's why I ended up on it.  I suffered from depressive episodes following break-ups, but the real bad one was when I got the panic attacks/agoraphobia.  My sister had it, too.  Not sure what that means.  But through all that I was functional, and didn't have nearly the intensity of things I have now, nor the combination.  Just a completely different animal.  

I had a girlfriend who was a nurse and studied some kind of energy healing, but it was illegal to practice it so she only did it when people were sleeping.  There are people who work with energy fields, who can see them; I saw one a couple of times, he was from Poland and was brought to the US because he had been very successful.  Here's the great thing about it -- it didn't work, so he gave me my money back.  Ever hear of any practitioner giving you your money back because they failed to help?  I'm not really a believer in most of these things, but I'm not a disbeliever, either.  It's like God -- no way to prove it one way or the other, so it's more a matter of faith than reason.  But it would be equally wrong to discount all these things -- life is a mystery, most truth is hidden to us so far.  Amazing how the ancient Hindus and Greeks knew a wall really isn't solid, it just looks like it is because we don't see very well.  Now we know it's made up of microscopic particles with lots of space between them, constantly moving, not solid at all, but people have known this for centuries, they just couldn't prove it.  Now we can.

I think a combination of techniques is probably best.  The cognitive idea that no matter what you learn in therapy, you'll still be conditioned by the way you think makes sense to me, though it never helped me (yet).  But it also has always seemed important to learn if there is a first cause.  I don't know, my sister and I never spent much time together, she was seven years older and we spent much of our lives living in separate cities, but to have the same mental illness is more than coincidence.  That would argue for some biological cause.  But who knows?  We also grew up with the same family.  

I believe it's illegal in this country to use children in drug trials, so companies go to Africa and buy their way in sometimes.  Usually ends in scandal and lawsuits.  But they also kick out anyone who's more than moderately ill from studies, and you'd be surprised at few people are studied, how short the studies are, how few people the drugs help, and how well placebo does.  It's not all about money, but too much about money.  
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Again forgot something.  Tryptophan isn't necessarily so good for building serotonin in the brain.  Works for some, but most serotonin in the body isn't in the brain, it's in the gut and other places as well.  Hard to get it where you want it.  5HTP, a step up on the chain of tryptophan, works better.  Anyway, I tried it and tyrosine, but it made the withdrawal worse.  As i said, my intention after quitting Paxil was to try and do it with natural stuff, but after quitting everything fed into the withdrawal instead of working as it would normally.  Or not work at all.  Everything made me worse, or most everything.  Going off Paxil just did something very weird to me, and to a lot of people, though I hear it's not as bad as going off effexor.

My psychiatrist keeps trying to tell me I'm bipolar.  I keep asking where the manic episodes are -- where's the fun part?  He's such a dork, when I need more than a refill I pay for a psychiatrist out of my health plan.  
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