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 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

[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 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]

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.

[Jaquta]

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

[Amphitrite]

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.