Long-term Paxil withdrawal

[Paxiled]

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.

[Jaquta]

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

[Paxiled]

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.  

[Jaquta]

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

[Jaquta]

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

[Paxiled]

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.

[Jaquta]

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