Paxil Free

Tuesday, October 17th, 2000.

Angela wrote (on paxil progress.org/forums):

It has been three weeks since I have been off of Paxil. I’m terrified.

Every now and then I feel some withdrawal symptoms, nausea, severe headaches and total lack of focus and concentration. But what scares me most is the way my mind is working.

I have been so angry lately, I lash out at my friends, I already lost one, and almost lost my best friend because of the horrible things I was saying. I just spoke to my boyfriend, and hung up feeling terrible, because I keep having mood swings. One second I want to hurt someone, I want to punch, kick scream, anything — the next, I am sorry for feeling this way, and sorry for acting the way I do. Is this a result of a chemical imbalance created by the Paxil? Wow. I wonder if the chemistry of my brain is going to remain in this “schizophrenic” trance.

While I am no longer feeling depressed, I feel trapped. Like I’m in a jail, and I want to break through the walls that surround me. I want to kill myself because I am afraid of what I might do, who I might hurt, that I am a truly horrible person and that I do not deserve to live. I don’t know what to do, or think, or say.

Susan wrote:

My advice is not to be alone too much, and not to let your thoughts dwell on dying. You are not a terrible person — keep reminding yourself what you are going through, that it’s the Paxil withdrawal, not you.

I haven’t quit yet — I just lowered my dose from 10mg to 5mg every other day. About a month ago, I lowered my dose to 10mg and I noticed the ANGER more than anything. I don’t think I have any more anger inside me than the average person, and possibly less, but I felt furious for about a week or two. And I noticed that the worst seemed to be that time before my period. (The Paxil may have been buffering my emotions during that time.)

My boyfriend was over one evening, not feeling well himself, and said something that I normally could have handled, and I slammed the door behind him when he left. We tried to talk a few days later, but it didn’t go well — then we didn’t talk for nearly two weeks, but are now back on track.

My point is, I’m sure the change in my neurochemistry had a lot to do with it. I was so upset one evening, I got into the word processor on my computer and wrote down, “I am angry…” and then a list of all I was angry about. I came up with 23 things, and intended to come back to it. And a lot of the things were not concrete things that had been done or said, but my perceptions about what others thought about me, and the INJUSTICE of it all! I really felt vulnerable. (I am a little nervous about this upcoming week of my cycle.)

Please be kind to yourself, even if you are having a hard time feeling kindly towards others right now. If you had a daughter and she were experiencing what you are experiencing, how would you want her to think about herself? Try to be a kind parent to yourself. Take care.

My response:

Experiencing irritability problems? Kind of feeling like killing someone else or killing yourself? At this moment in time, I think I can relate…

The number one thing to do right now is not kill yourself. I’ve been weaning myself off Paxil for 41 days now (I’m almost down to 5mg), and that’s 41 days of my life not being mine. I’ve been smiling patiently the whole time, but I am so sick of it that I am ready blow, I am ready to lash out, and I have days where it seems that the most reasonable thing to do would be to kill myself. The clarity of this thought when it’s there is — how do I describe it? Talk about a mind trip. The only thing that keeps me going is the knowledge that everything I’m experiencing is being caused by the Paxil withdrawal, and that eventually the withdrawal itself will withdraw. I don’t know when, but for now I know that what I’m feeling isn’t my fault, and that I’m not crazy.

At the same time, while I know that I’ll be enduring this for some time to come (and I hate it that my life isn’t mine while this is happening, that I can’t even begin to live my life the way want to while this junk is making me into a zombie) — at the same time I know what I have to look forward to (it’s going to get worse before it gets better). On top of the frustration I naturally feel from having my life made unproductive, uncreative and useless by this wonderful little pill, I’m beginning to experience the irritability that comes from withdrawal — and it’s the kind of irritability where I don’t even want to look at some people, I don’t want them to look at me, I don’t want to listen to them open their mouth and say something stupid that I don’t have the energy for. I have become one big ball of sunshine. I have moments where I feel I could grab some people by the head and break their neck, or just punch them in the face and knock them unconscious so I won’t have to deal with them.

Kinda scary, isn’t it? Everybody thinks I’m handling this situation with ease. They don’t know the half of it. If it’s disturbing to read what I’m saying here, it’s a hell of a lot more disturbing being the one living it, believe me.

Right now I would like to live in a log cabin in the woods and be left alone. Not so that I can go off by myself and blow my brains out, but because I know that the more people I have to deal with everyday (especially stupid people, as well meaning as they may be), the more likely I am to punch somebody in the face or tell them to f*** off…

Well aware that this is where I am right now, I do everything I can to avoid people. This isn’t anti-social; at the moment it’s just a matter of survival. I would like to lock myself away until the worst of this is over with. Goddam Paxil.

But the point is, you’re not alone with the mood swings, with the extreme surges of anger, etc. — and after everything you’ve been through because of our little friend, Paxil, who the hell wouldn’t be? I’m ready to commit violence on some people because they have no idea how debilitating this experience has been — they have no idea what a challenge it has been for me to maintain my civility throughout all this.

I haven’t lost any friends yet, mainly because I’m staying clear of everyone as much as possible. I think most of us going through this have experienced some kind of personal loss due to the Paxil withdrawal. That’s doesn’t include the loss of the quality of our lives while we’re being put through this shit, the loss of our living. Regardless of the physiological effects of Paxil withdrawal (which are extremely unpleasant and often debilitating), the psychological effects aren’t exactly a walk in the park either. Let’s not forget this.

My own personal prediction of how my withdrawal will go is that all the feelings I would have normally experienced while I was taking the Paxil but were numbed out by the Paxil — every single one of them is going to come back with a vengeance. It doesn’t mean a relapse into a depression or anxiety; it means that all the feelings that the Paxil didn’t allow me to feel are going to be felt now. So regardless of the physical symptoms of withdrawal, of living without Paxil, the psychological experience itself will be a motherload. When I get off the Paxil, I don’t expect to bounce back to my good old self right away. It’s going to take time. That’s just a theory, my own speculations based on my previous experience of cold turkey withdrawal.

This Paxil withdrawal experience has affected everything in my life since it first happened in early July. I’ve been living a useless life ever since. That’s how it feels anyway. And now that I’m almost down to 5mg, I’ve got the mood swings, the sudden burst of anger, irritability on a level which is off the scale, insomnia, occasional suicidal feelings, dizziness, gastric disturbances (to put it kindly) — the works. The only thing that keeps me going right now is that I know it isn’t going to last. I don’t know how long it will last, but I know it will pass as long as I do everything in the meantime to keep myself healthy (vitamin supplements, exercise, staying away from annoying stupid people, etc.).

The other thing I’ve had to do recently is to tell the people who know that I’m going through withdrawal that I have reached the stage where I am extremely irritable and that they shouldn’t take my unfriendliness personally, and that the best thing they can do is to not push themselves on me. It other words, I’ve politely told them to get out of my face. While I’m going through the irritability stage, something as simple as that has made a difference.

First response:

Reading your message is like reliving my own nightmare. You have so very eloquently expressed feelings what I and many others have had as we journeyed through our withdrawals. I still have a lot of anger over the experience, but in our society you’ve got to be careful who you express those feelings to! You’ve done so much for us on this board in letting us know that our experiences weren’t out of the ordinary or unique — unless you’ve taken Paxil.

THANK YOU for sharing. It really means a lot to me to know that others have felt similar emotions.

Second response:

Thanks for being so candid and sharing your story. I’m gonna risk getting my neck broken here, but the rush of emotions that you will feel again when you complete withdrawal may not be as bad as you’re expecting. I’ve been reading posts here since July 2nd, and I’ve never read any that make it sound hard to deal with. On the contrary, most have said that it felt great to be able to cry again, etc. Tapering can be rough and the days after your final dose may be rough, but at that point, you know that the end is in sight. Your anger should subside. Hang in there, you’re probably in the worst of it right now. When you’re out of this, I hope you can spread the word about what Paxil did to you and prevent others from suffering. I sure have sympathy for you. Let us know how you’re doing.

Third response:

Thank you for your post. I felt myself choking up reading it and reliving the experiences you have described.

I, too, have been down that road. I have never been prone to angry outbursts, so it was really hard for me. I have felt so much shame for acting the way I have toward family (strangely I didn’t feel anger toward others). Many times they would just look at me “stunned” at what they were hearing come from little ole docile me! My rage was mostly ranting and raving. Thank God I didn’t feel suicidal or want to physically hurt anyone. My words were bad enough and I am sure they caused pain to others.

I have been off Paxil for 6 weeks after taking it for 6 years and can tell you that it will get better. My anger lasted for 2 weeks past my last pill and then went away. Some days it wasn’t too bad and others… well… let’s just say I wasn’t too much fun to be around.

I started taking St. Johns Wort about 3 weeks after my last Paxil and just quit taking it a week ago. I have been going through the anger period again just in the last week. I really think and hope it is from discontinuing St. Johns Wort. I am hopeful that I will get past this last bump too.

Wednesday, October 18th, 2000 (continued).

Doug said to a previous message:

This is an excellent response. I agree. However, I must state that I took Paxil for almost 3 years and it seemingly worked wonders for me… for a while.

The people I know personally (not through email or through paxilprogress.org) who took Paxil for extreme anxiety and panic attacks — every single one of them ended up taking on that “sedated” look I mentioned before. And there’s no way that can be good. All of them say they couldn’t live without Paxil, regardless of the weight gain and the sexual dysfunction it causes them. But neither have any of them done anything else except take Paxil to take care of themselves. They’re still living off coffee and cigarettes like they’ve always done. So, in a way, they got what they deserved. Nothing gets better in the absence of a willingness to change. Taking a little pink pill only delays the inevitable.

The calm that Paxil may provide can offer one the opportunity to work on the anxiety, but the anxiety will come back if one doesn’t actually work on it. This is something I see happening with many people, as well as having lived through it myself. It doesn’t take much to figure this one out.

I agree with you that Paxil can and often does make a difference at first. I have no doubt about it that Paxil did help me at one point; it helped me get through an extreme crisis situation, extreme stress, extreme anxiety, all during a time when my coping skills were not so good. For the duration I was on Paxil, I did everything I could to get my act together — and now, except for the anxiety related to the withdrawal, I do have it together (I hope). When I think of how I was, say two years ago, I am amazed at how far I’ve come, how effectively I deal with anxiety and stressful situations when they come up. I’m not 100% all the time, but who the hell is? (Nobody.)
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Friday, December 1st, 2000 (continued). Responding to a post on paxilprogress.org:

I’ve always been able to deal with the emotional symptoms (e.g., the suicidal feelings) easier than the other symptoms (e.g., the electrical surges). The electrical sensations just about drive me insane. More than any of the other symptoms, they’ve made it impossible to be me and to do what I love to do.

I have felt on-and-off suicidal since my first cold turkey experience in early July. I still haven’t completely shaken the feeling, but I can tell you that it subsides to the point where it’s just a faint echo of what you’re feeling now. You’ll remember it, and in a sense it’ll still be there, but you won’t feel any urge to go through with it.

The only way to get through now it is don’t kill yourself (simple, right?). Your body and your brain are going through one serious motherload of a neurochemical adaptation. You have to give yourself a chance to get through it and to go through it. As you know, there are some sudden benefits to getting off the Paxil — I’d say focus on those right now and enjoy them as much as you can. And the next thing you know, you’ll be feeling crappy, but you won’t be feeling suicidal. And that’s progress. And gradually everything gets better. That’s the only thing I can say with some confidence.

It’s been a long dragged out experience, but a little tiny bit at a time, I’ve gotten better. So don’t kill yourself and you will too. And don’t forget to take plenty of B Complex.
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Thursday, February 22nd, 2001.

I spent a solid seven months withdrawing and recovering from Paxil. Only recently have I been able to get on with my life, or at least begin to take the first steps. I feel confident in moving forward, but at the same time I feel uneasy. It’s as if I don’t know if I’m the same person I was before all this began. Has anyone who has survived withdrawal experienced this apprehension?

Sometimes I seem to slip into a state of shock when I’m struck by the fact that seven months of my life were consumed by withdrawing and recovering from Paxil. I become almost bawled over by a tremendous sense of loss. It’s emotionally numbing. The more I get out into the world again, the more I realize how much of my life I’ve lost, and it doesn’t feel so good; it’s surreal and sad at the same time. I should be feeling good that I’m getting on with my life after the Paxil withdrawal, but all I seem to be feeling is this sense of loss. I didn’t expect to feel this way.

First response:

November 3rd, 2000. That was the day I ingested my last Paxil pill (I was down to 5mg for a month). It was a day of celebration for me! This was my fourth and last attempt to leave that fog I was in. My family couldn’t understand why I was so excited. They have been supportive but I don’t think they can truly understand! Since that day I have experienced a whole new set of problems, I would say at the neurological level.

I understand how you’re feeling. Everyone that has suffered bad effects from Paxil have had differences, but we have all suffered. I’ve read stories about people who feel great after finally getting off. I am not one of them and you may not be either. I can’t measure my recovery day by day. I can only look back from month to month and see improvement.

I sense you are strong and determined to get better and that’s part of it. I am better than I was three months ago, but I still feel I have a way to go. Please keep telling yourself you can do it. There are us out here that are willing to support you.

Second response:

You’re where I was after I spent one solid year trying to recover from the withdrawals of Paxil. One day I declared that it was officially “over” (little did I know), and then was overcome by the most profound grief I had ever experienced. Not only did I mourn the amount of time I’d spent being in hell, but I was mourning some part of me that I felt had been robbed — eradicated — by Paxil. I felt disconnected to a world through which I once moved so swiftly and easily.

I now viewed the world as a hostile environment; after all, the doctor I had trusted lied to me and coerced me and then betrayed me. I no longer had my innocent trusting nature. I felt as though I had been held hostage and was now released into a world that I didn’t like very much. It was the most devastating experience of my life.

It took another year for me to comprehend what true damage this drug had done to me and with each realization I became madder and madder (at least that was better than sobbing every day). Someone told me that my anger would get me through it quicker than anything else because it seemed that I was going through the stages of grief that one experiences when a loved one has died. It took another year for me to get to the acceptance stage, albeit reluctantly. I was not happy that I’d been changed, but I just kept telling myself that it was okay — there were still plenty of things for me to do besides what I did in my previous career.

So you are not alone. I think all these feelings, troubling as they might be, are perfectly normal. We have been robbed of a period of our lives and we can never get back even one day that we spent with the headspins, the visual lags or the zaps. So good to hear your update. I wish it were more positive, but I do believe that you will still continue to get better as time goes on.

Third response:

I’m so glad you posted this. Here’s why:

During the worst of the withdrawal symptoms, I called around trying to find a good talk therapist because I felt so upset — I felt I’d benefit from talking with someone about this. I saw someone this past Tuesday. It was just a consultation appointment; I like to check these people out first before getting into my feelings. What really took me by total surprise was that very intense emotions welled up inside me and came out in that brief session. I even cried! I couldn’t believe how hurt and sad I felt. I told this therapist that I had no idea all these feelings were so intensely deep inside and that I wasn’t sure what to do with them all.

She was a DUD therapist and didn’t offer even a glance of empathy, so that made it all the more painful. But, I discovered during that experience that I’m grieving a tremendous loss and feeling of having wasted years on this medication. My feelings are just incredibly intense regarding my concerns about what this drug may have done to me. It’s overwhelming at times.

Know that you’re not alone. I’m so glad you shared this.

Fourth response:

Yes, I identify with your feelings a lot. I wouldn’t be surprised if many people feel a grieving over their experience. Just wait: some dorky psychologist will coin the phrase “Post Traumatic Paroxetine Disorder” to address this. I hope not, but there is a need for a time of valid grieving in my opinion. It would make sense.

There has been tremendous betrayal and loss with the experiences we share. We’ve been abused by the drug industry, basically, and cheated by our doctors, who should have known better. And yes, as you put it so well, the time and the life we’ve lost and the horror and fear we’ve experienced during withdrawal have been great. I alternate between feelings of grieving and sadness — and feelings of anger towards the medical “profession” (along with plenty of mixed feelings towards friends who were far from friendly with me during my withdrawal). I’ve really lost respect towards the medical profession in general. I think it’s become so specialized that the right hand doesn’t know what the left hand is doing, and we’re all suffering for it. Plus, no one in the profession really holds peers accountable for their actions. Their little comradery on the golf course is more important than the ethics of their job.

Monday, May 14th, 2001.

Alice wrote:

I was wondering, is it possible that going off 30mg of Paxil cold turkey may have affected me neurologically?

My response:

Yes, it may have affected you neurologically, and I often wonder the same thing, whether my cold turkey experience caused permanent neurological damage. And, despite my optimism at times, I don’t really know the answer to that question.

I have been off Paxil since November, but I am still feeling the effects of the withdrawal. Maybe the cold turkey withdrawal did cause permanent damage of some kind. I’m not sure. I can only wait and see how things go. My body and my mind have gradually been readjusting to being Paxil-free, but, for me, the adjustment is still going on, so I’m not able to say how permanent any of the damage is yet.

I can’t judge my level of anxiety or my mental state too well right now either because there’s nothing about my present situation which is socially normal. In February I tried to get back into the real world and find a job, etc., but I got hit with extremely bad headaches for a month before I finally had to come back to where I am now, out in the middle of nowhere, sitting around doing nothing, feeling useless.

My problem hasn’t been anxiety, per se. What I’ve been experiencing is extreme muscle tension, especially in my head and neck, but not exclusive to my head and neck. If you know how to crack your knuckles — my whole body makes that sound. I’ve tried to describe this before, but I’m afraid of sounding like some guy who wears a tinfoil hat to keep the alien signals from penetrating his brain through the fillings in his teeth. When I describe this stuff, it seems as crazy to me as it does to anyone else. But imagine the sound of your knuckles cracking. I get that around my head. My head feels like it’s filled with wet cement. It’s not like the electrical shock sensations, but it’s not much better either.
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May 29th and July 26th, 2001.

I want to talk about the common thread which I think is apparent in the experiences of everyone who has been through paroxetine withdrawal; and, in big bold letters, that common thread is THE FEELING OF BEING CUT OFF FROM THE WORLD. Often it’s not just a feeling; it’s a reality. There are plenty of other crappy things I could single out, things others may consider more important issues, but for me, this is the big one because I’m still working on it; it’s the one which I think causes the most damage and requires the most healing.

Oliver Sacks addresses this in his book, Awakenings (1990 edition), when he describes how a disease can consume a person’s life, consume all of their energy and attention for such a long period of time that (from page 240): “they feel, on the one hand, cut-off or withdrawn from the world, on the other hand immersed, or engrossed, in their illness,” a feeling which I’m sure anyone living with paroxetine withdrawal can relate to. Then he goes on to speak about the ‘awakening,’ or the recovery, in which one ceases to feel the presence of the dis-ease, but is instead naturally drawn towards and engaged by the presence of everything in the living world around them.

It’s been just over a year since my initial withdrawal experience and I wish I could say that I no longer feel the presence of this disease, but I can’t. (Paroxetine withdrawal, and post-withdrawal, is a dis-ease. I’d love to meet someone going through withdrawal who’s sitting back at ease with all of it.) It is less present than it used to be for me, but, along with other symptoms which I am too sick and tired of to describe in detail, I have chronic pain (as in all the time) which disrupts the relaxed flow of my thoughts and feelings and kind of takes the fun out of things; it gets to me at times. It is this cognitive disruption, one which seems physiological in origin, that interferes with my fully feeling the presence of the world around me like I used to, of my fully being able to be myself. I’ve been trying to “walk it off” all this time, but I can’t.

Throughout my Paxil Experience I’ve had people full of good intentions pass on to me the age-old advice, “Don’t dwell on what’s happening to you. Just go outside and enjoy the sunshine and the simple things. You’ll feel a whole lot better.” That’s a simple solution that works, and I know it works because I’ve lived by it for many years — but it works for people who have their health, not for someone who feels like they’ve been hit in the head with an aluminum bat from the withdrawal seizures and the constant headaches and body aches. Let’s crack one of these good-intentioned people across the head with a two-by-four and then tell them not to focus on the pain (impossible); tell them to go out for a leisurely walk while their head is pulsing with pain and enjoy the sunshine which will surely make them feel so much better. Maybe then they’ll realize how misplaced and absurd some of that age-old wisdom can be, especially when it comes from people who don’t have the experience to back it up.
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