Coming off serzone

Hello

I have never posted a message before, but I really feel I need some help. Some background first. I'm female and aged 47. I'm single and live alone. I don't have kids, though I have nieces and nephews that I'm close to. (I used to have a big career and lots of friends ...) I've suffered from so-called Major Depressive Anxiety Disorder for the last 7 years. I had a breakdown at the beginning and began seeing a psychiatrist at that time. He had previously helped my brother and was therefore recommended to me. He prescribed Aropax (seroxat/paxil) to begin with and I took that for about 9 months, with some relief. However the nightsweats didn't stop and I continued to feel suicidal, especially after I had to stop working completely (unable to face people, unable to function at work etc). He added a tricyclic to the Aropax and the nightsweats stopped. However, I gained 3 stone in 3 months.

He then dropped both the Aropax and the tricyclic and replaced both with Serzone (nefazadone), which was new in my country at that time. That was in Oct 1998. He quickly increased the dosage to the maximum and I continued to take that dosage until very recently. During that time, I managed to return to work for brief periods in 2000 and 2001, but had to stop and have not worked since. I continue to live reclusively, seeing mostly only immediate family members, though for the past two or so years have managed to meet two friends for coffee occasionally. I do not have people to my home - it's very much my safe haven. My episodes of suicidal thinking, planning and mentally writing the notes became less over time, though would still happen occasionally. I have not slept properly at all in the last 7 years. Fall asleep OK, but wake anywhere between 3 and 6 times a night. Have also taken Lorazepam and Nitrazepam during these years with no sleeping benefit. No longer take these.

During this time, I also spent four years seeing a separate therapist/counsellor where we re-hashed the past and I got very angry with my parents and family and everyone I'd ever known. In the end, she drove me mad with her "what shape is your anger?" etc and I stopped seeing her. But, in retrospect, a lot of it was damaging.

In the past year, I have also had two malignant melanomas removed and now have 6-monthly checks, with suspicious things removed each time - new things grow and existing things change constantly. I have had spots in front of my eyes and visual trails for years. I lost the 3 stone weight-gain after switching to Serzone, but remain two stone heavier than before beginning any medication. I often crave sugar.

I had insured my income, so have been able to live on the benefit that that policy pays. Each month I have to fill out a form for them (my psychiatrist also completes a form). Each month, I have to describe how I feel on the form. Each month it reads pretty much as follows: total exhaustion, suicidal thoughts, almost total insomnia, lack of concentration, inability to be with people, lack of motivation etc etc. That's how it's read for years.

Add to that, awful relationships with my close family - so much anger/rage from me towards them - inability to think properly, total lethargy - I continually felt "what's the point". During this time, my psychiatrist has been my "security blanket". I see him every fortnight. We do a lot of talking. I have trusted him absolutely, have often said I don't know how I would manage without him. It's always felt like a long time between appointments. I have looked forward to the appointments, and felt better after them. His has felt like the "voice of reason". He has been unfailingly kind and supportive.

Now, it's all changed - and therefore my request for help/advice. (Sorry for so much preceding info but I want to give a clear picture.) Serzone just got discontinued in my country (not withdrawn, just "discontinued due to declining sales". Oh really? How surprising, given the liver problems, which fortunately I have not had). Anyway, my psychiatrist recommended Effexor to replace Serzone. He said Serzone would need tapering off before stopping. I said I wanted to see what I was like without any medication before starting Effexor. I started tapering off Serzone (max dose) 11 weeks ago. It took 8 weeks to stop it completely. For the first four, I felt no different. Then, one Sunday afternoon, I couldn't breathe. It was that anxiety in the chest - the one where you just can't draw a deep enough breath. I recognised it, told myself I wasn't having a heart attack, and tried to carry on as normal. I had had the feeling before and previously it had lasted as long as several hours. On this occasion, however, it lasted - off and on - for 11 days. During this time, I thought "if it's a heart attack, I don't care. Just make it go away." I also went online to try and find out what was happening.

And that's when I opened the can of worms. I am so angry that I had no idea that the ssris and Serxone and Effexor were so controversial. I have now read so many accounts of withdrawal symptoms, side effects etc. Some real horror stories. Plus the fact - which I did not know - that these drugs only work for some people. Plus the fact that they are under further investigation in both the UK and the US, for possible increase in suicidal thoughts in adults as well as children, and for withdrawal symptoms. And the Public Advisory from the FDA also states investigation into "worsening depression" with a list of symptoms or effects that I can tick off at least half of.

So I couldn't wait to take the last half of the last tablet. Did that 3 weeks ago. Apparently with all the complicated half-life stuff, it took another week to completely leave my system. But according to the manufacturer, whom I phoned, the length of time it will take for any "effects" to leave my system is an unknown. And whether those effects are positive or negative was unspecified. Does anyone know how long it might take?

Since I took the last Serzone 3 weeks ago - in fact, gradually since just before finishing it, when the dose was getting really low - I HAVE FELT SO MUCH BETTER!! I feel stronger each week. I feel like myself again. I am laughing more. I have told those same close family members about stopping the medication. They are supportive. My relationships with them have improved - my anger has gone. Where has it gone? What rage? What aggression?

I feel happy, I feel positive, I'm confident about the future. But in a calm, relaxed kind of a way. I know I can't achieve the life I want overnight, so I'm happy to just enjoy each day, feeling quite secure that I can re-build that life over time. I don't feel any pressure (on myself). Everything now seems "worth the effort". But here's the difference - it's not an effort anymore. I have more energy, more motivation - and I'm not even trying. Only two downsides, still have insomnia (could that be a side-effect still wearing off?) and am eating too much (partly from being tired, I think) - but cooking and enjoying the food more!

There's one other big part of the puzzle. About 3 weeks ago, about the same time I took the last Serzone, I found The Learning Path. Read it over two days. Slept the best in years those two nights. Made an effort to push away the "stimulating" familiar negative thoughts over those two days - and they haven't come back!! This is after years of same old, same old rage/anger/thoughts/circle/repetition. Seemingly just gone. Circle/cycle broken. Can it really be that easy? The Path resulted in an immediate paradigm shift in my thinking. I don't have to have depression. This was news to me, and I have fully embraced it.

Guess what? My psychiatrist has not. I downloaded The Learning Path, printed it and took it to him. Asked him to read it - partly for me, partly because it might help others. He hasn't got beyond the first few pages yet (though I think he will make the effort) but mentioned yesterday that he thought it was going to be "anti-medication". I said no, it was broader than that, but therein lies my problem.

He does not attribute the fact that I feel radically better to now not taking any medication. When I asked him what he does attribute it to, he said "who can know?" He does not accept that anything I have felt/thought/experienced over the past 6 years as possible side-effects, rather "the underlying condition". When I saw him during the tapering off period, after I hadn't been able to breathe properly for 11 days, he immediately reached for his prescription pad, saying "that's obviously the underlying condition coming through, let's start the Effexor". I refused, equally obviously.

(One more thing, coincidentally I started taking omega-3 on the same day I started tapering off the Serzone.)

My psychiatrist is encouraging and supportive of me feeling better, but each appointment now seems mostly taken up with him defending medication in general. I'm sure it's great for loads of people, and I also happily admit that I took it in the beginning with my eyes open. In the beginning, it probably saved my life. But I have been unable to find any studies/research/results of the longterm efficacy of Serzone, nothing beyond 12 months. And I've just spent the last 6 years of my life taking that drug, with no great improvement. I've also now got the melanoma worry (my personal belief, the melanoma kicked in while my immune system was down - due to the depression or a side-effect of the medication?) and I have also had major surgery early this year, fibroids removed (found one listing of side-effects of Serzone, published by the manufacturer Bristol-Myers Squibb, that included under "rare" - "enlarged uterine fibroids"). Also found in the same document, side-effect "breast pain". Late last year, I had an urgent mammogram and ultrasound for continual and prolonged unexplained breast pain.

Can anyone help with advice? What is concerning me is that I want to continue to trust my psychiatrist but it now feels like there is a brick wall between us, and I also want to hang on to how good I feel. I don't want to lose it. I thought maybe I could see a psychologist (that would be new for me) to learn some social confidence (I used to have a high-powered, high-stress creative job that I was very successful at!) and some "life" skills. Any advice would be really gratefully received.

Sorry this has been so long. One of the reasons I have asked for advice in this way, and haven't discussed this with family or friends, is because I don't want their criticism - too much of that in recent years.

Thank you
Juno