I am SO Confused and getting scared, 7 year SERZONE user

Postby Tony O » Wed Jul 21, 2004 5:27 pm

Hello all fellow Serzone/Nefazodone users. I am a 7 year Veteran of 200 mg a day - 100 X 2 - I am at a point in my life, where I am REALLY upset about this whole deal of Serzone and Nefazodone. This drug helped pully me out a a suicidal, TOTAL insomnia and 50lb weight loss Depressive episode 7 years ago, and against Doctors advice, I NEVER took it above the 200mg a day. However I discovered 3 years ago, that this stuff is BRUTAL when reducing, I went to 150mg a day for 5 days, and thought by the 5th day as if I was heading towards a stroke or Death, I could not turn my eyes, and my left leg was totally numb, VIVID dream sleep/nightmares and Vivid Hypno Gogic imagery everytime I closed my eyes, I thought to myself (DEAR LORD, WHAT IF I CUT IT IN 1/2 OR GOT STRANDED SOMEWHERE 5 DAYS WITHOUT ANY MED ? I can't think about that, it terrifies me. My depression was killer insomnia so it seemed, total. And Serzone did help reset my sleep cycle, I still am only about a 4 to 5 hour broken sleep sleeper after 7 years, and usually awake from a dream and the weird part is if I sleep for 2 hours after a long day, I awake after 2 hours sometime, and feel TOTALLY rested like I never slept, or needed sleep, anyway I am not sure if I need some med, I was always told I would need this for the rest of my life, but I do not think with groups trying to sue the FDA that will be an option, yet I am ONLY Breadwinner for my Family and CANNOT lay around feeling crazy and having Drug Withdrawal. By the way I missed a 100mg tablet a few days back, my afternoon dose, 3 hours later I got so mentally flat it was AMAZING, somewhat depressed, and HORRIBLE sleep that night, with VIVID nightmares, and just feeling mentally out of it. Next mornng I thought I MUST have missed a dose to feel that lousy, I checked my pill box and sure enough there was the 100mg afternoon tablet. My Gosh this is a BRUTAL drug, and my old Doctor said my numb leg, and locked up eyes etc. were just "MIND TRICKS" yeh right. Recently I cut down on my own, I filed off small amount4 to 5 days, then a little more etc. I got down to about 180mg a day for almost a month, I did not feel bad, but I felt DIFFERENT, on a good note, I re-discovered what a LIBIDO is, I thought more about sex, and felt I wanted it with my wife, it still wasn't like the PRE SERZONE days, but I can't help to think LIBIDO would only get better the lower I kept going, BUT my mind got the best of me, and reminded me of the Doctors "YOU WILL NEED THIS STUFF FOR THE REST OF YOUR LIFE" I am only 34, and have missed out on a GOOD libido for last 7 years, I worry about my Liver, I worry about them Banning it, even thought they say the USA will not UNLESS they bring ALOT of new reports of liver failure. I am the ONLY Breadwinner for my Family, and cannot go down with withdrawal that 98% of my Docs don't even believe exists. What can I do ? I am tterribly confused and upset, I mean 200mg a day is not alot, but it is enough to let me TOTALLY aware when my body does not get all it needs. I mean the 180mg a day, I did ok, but felt off balance with my walk, and tremors inside, but not shaking visibly, it was not as bad as missing a whole 100mg tablet or the 50mg a day reduction I did, but HOW LONG till they subside usually before I advance in more reduction ? Do people lose their mind literally coming down or off of this drug after a long time ? Tasha said give it 2 to 4 weeks I believe, I need all advice I can get before I talk to the Doc in Sept.

Sincerely - Tony O
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#1

Postby Juno » Wed Jul 21, 2004 7:49 pm

Hi Tony

Hang in there!

Firstly, you deserve a better life than the one you're having. A life where you're not filled with panic about not being able to take your medication. As for "having to take it for the rest of your life" ... from all the current evidence (and about-to-break ssri scandal) it appears that's just not the case.

Have a loop at the following site.

http://www.paxilsupport.homestead.com/


I know it says paxil, but it's a support site for all ssris - with specific advice on withdrawal protocols - and I know technically that Serzone is not an ssri, and actually it's not even listed on this site by name, but it is categorised with the drugs which are (read the FDA Public Health Advisory dated March 2004 for the full list of the ADs under investigation).

The site I have recommended is UK-based and set up by Dr David Healy, a psychiatrist. He is the person responsible for the British Safety Medicines now investigating all of the same drugs.

Don't pay any attention whatsoever to doctors who tell you there's no such thing as withdrawal from these drugs!!!! The current investigations in the UK and the US are specifically about "worsening depression, increased suicidality and thoughts, and withdrawal". Print the stuff out and take it to your doctor.

Read my reply, written yesterday to Nikki, under her post "long-term effects of ssris".

You are not alone! You'll get through it, Tony. And a thought to cheer you up - I've just stopped taking Serzone after 5 and a half years on it (with 2 years on paxil before that). You can read my recent posts for details, but the main point is that I was taking 650mg daily (100 in the morning, 550 at night) for that whole time. I did return to work for about a year, but mostly I had no life, no job, lived reclusively, was filled with rage, cried a lot, planned suicide frequently and hated myself for not doing it, saw my psych fortnightly, didn't sleep properly for that whole time ... and every time I asked my psych when would I start to feel better, he would say "it takes time".

The only reason I stopped taking Serzone is because it was discontinued in my country. And surprise, surprise, I feel 100% better. I started to feel stronger and better as the dose got lower. My doctor is stunned, and admitting nothing regarding my "miraculous" recovery, though is now admitting withdrawal effects and side effects. The withdrawal effects are largely gone now, after 9 weeks since my last dose. I tapered off over 8 weeks, quite fast, but couldn't wait to get it out of my system once I discovered the controversy that surrounds all the ssris plus effexor and serzone (neither of which are technically ssris but are categorised with them by both the FDA and the British Safety Medicines authority).

My depression is "gone". Just disappeared, along with the last dose of Serzone. So maybe I was one of the people who suffered from "worsening depression" on Serzone - who would know? I suspect we're a while away from answers, but they will come.

I've got a question for anyone else reading this - how come it all seems to be about Serzone? Or Serzone withdrawal? I actually thought - from my reading - that Paxil and Effexor were worse to withdraw from? Is it just that people are having to come off Serzone?

Let me know ...

And, Tony, good luck. Keep posting, keep the faith. By the way, armed with knowledge and information, why not see you doc earlier than Sept? Why wait? You really might feel better, sooner. I hope so.

Juno
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#2

Postby Juno » Wed Jul 21, 2004 7:53 pm

That's meant to be "have a LOOK at the following site" of course. Fingers working faster than brain ...
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#3

Postby Mermaid » Wed Jul 21, 2004 10:57 pm

Tony O,
Tasha created a great post for helping anyone through withdrawing from an SSRI and I bet it would help you. Go to Tips for releasing toxins after SSRI withdrawal or just search for that topic.

It is not just Serzone that causes problems. As Juno said, it is being talked about more since it was made illegal in (UK?). As long as 5 years ago I was reading on websites about withdrawal from Paxil, Prozac, Effexor. Withdrawal from some are worse than others.

Thanks for the great information, Juno!

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#4

Postby NikkyM » Thu Jul 22, 2004 2:20 am

I've got a question for anyone else reading this - how come it all seems to be about Serzone? Or Serzone withdrawal? I actually thought - from my reading - that Paxil and Effexor were worse to withdraw from? Is it just that people are having to come off Serzone?

Juno[/quote]

Hi Juno,

My name is Nikky I am a new member, I was reading your post to Tony. I think the issue around most of the posts being about Serzone is because of the liver issue. I chose to go off it voluntarily, however other individuals who have had it banned in their country, such as yourself have had to make a change whether they wanted to or not. I have read a lot of posts on other forums from people that were "ANGRY, DISTRAUGHT, PISSED OFF" that their "BELOVED" Serzone was being taken away from them. It's a bit of a laugh for me, but these people are really "SERIOUS". They love the drug and claim it was the only thing that saved them from a deep spiralling depression and possible suicide and no offense to Tony I am sure it helped him like he said, but it is a double edged sword I believe. I am not making jest when I say it's a bit of a laugh for me, I mean that sarcastically as I am one of the people withdrawing from Serzone and am having a hell of a time! I'm not a happy camper at all right now, so it's hard for me to "LOVE" this drug, it has become my worst enemy right now. I think a great deal of people feel as I do and Tony that the FDA will ban it in the US eventually under the pressure of lawyers/law suits against Bristol Meyers Squibb and the FDA. I really think it is just a matter of time and I want to be prepared and not be one of those serzone lovers who will have to taper fast or go cold turkey because it is unavailable to them. That's a whole other can of worms if they do, they will probably have lawsuits from indivduals who have gone cold turkey and experienced stroke like symptoms and seizures. I have also been reading about that happening with abrupt discontinuation of Serzone. Although as our astute physicians who say "there is no know relationship of withdrawal or discontinuation syndrome with Serzone" you don't know how many times I have read that and heard that!! Yes, all of us experiencing withdrawal symptoms, well...that's just in our heads! BMS announced in the US in May they would stop all production of Serzone on June 14, 2004. We do have a generic here in US but I am not interested, just want off at all costs and I do believe there are others out there who feel the same way I do. They may be scared of the liver issue, because honestly, since there have not been adequate studies done on this drug long term, who is to know how long it will take for the people who were seemingly unaffected liver wise by using this drug, will not experience problems in the future?? Can anyone definitively say that we long term users won't experience issues later on with our liver. "NO"! But some people are willing to take the risk, not to return to the DARK world of depression and I understand these people are motivated by lack of information and mostly fear and I do understand and empathize with them. But I also feel we all have choice and there are alternatives if explored to medication. My personal opinion is these issues have been the drivers behind the increase in posts relating to Serzone. Oh and yes, supposedly Paxil and Effexor are horrible drugs to withdraw also if not more than Serzone but I am believing that everyone is different and each have their own stories of how they were affected by these drugs, either positively or negatively during their withdrawals, so...it's hard to say.

Nikky M.
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#5

Postby Juno » Thu Jul 22, 2004 4:51 am

Hi Nikky

Thank you for all that info. I think you're right. Funnily enough, you know I hadn't even considered liver problems in the future. It's just incredible, isn't it? I was reading somewhere this morning, and am now going to try and find it again, that Paxil's manufacturer (can't even remember which one at this moment!) has just issued a statement saying do not exceed the maximum dose - 20mg per day. At least I think that's what I read. That's why I'm going to check it now.

I took Paxil for two years (1996 - 98) and I took three times that much. For God's sake ... but not the doctor's fault. At that time, he would have been assured by the manufacturer that it was all completely safe. Just incredible ...

It's making me wonder - having experienced my own miraculous complete disappearance of depression and all symptoms right at the same time I stopped taking the Serzone - which I'd been taking at 650mg a day for more than five years - if a similar thing will eventuate there? If maybe half or quarter that dose was effective, but the amount I was taking made it all three times as bad? Who would know?

Wonder if we'll ever get to know? And wonder if we can sue for "the lost years"?

Good on you, Nikky, for going with freedom of choice. And I can tell you that after 9 weeks since stopping, my withdrawal symptoms seem to have gone. (Maybe I've already written that in this thread - I've had a bit of a posting frenzy today ...!)

Juno
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#6

Postby Juno » Thu Jul 22, 2004 4:52 am

Interesting - that was supposed to be 1996 - 98.
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#7

Postby Juno » Thu Jul 22, 2004 6:58 am

Hi again Nikky

I found the stuff on seroxat (paxil) that I was looking for. I'm going to put it on the ssri safety ... guinea pigs post from earlier today. It's depressing ...

Juno
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#8

Postby NikkyM » Fri Jul 23, 2004 12:27 pm

Juno wrote:Hi again Nikky

I found the stuff on seroxat (paxil) that I was looking for. I'm going to put it on the ssri safety ... guinea pigs post from earlier today. It's depressing ...

Juno


Hi Juno,

Thanks for replying to my post. The question of dosage has always been somewhat questionable at best. I don't think physicians know honestly, and as you said it wasn't your doctor's fault with Paxil. They go by what they are given from the drug mfg's. Which isn't much...as everyone reacts differently to dosages. I was raised from 250mg to 400mg after experiencing some personal problems in 2002. Once raised I became irritable and violent. I couldn't believe how I became, it frightened me as I am not a violent person. Also another reason why I wanted off after experiencing that! It is known through the literature that violence and suicidal thoughts come at higher levels of AD's. But no one person knows where those levels start and end for an individual. I personally am VERY drug sensitive. I couldn't tolerate all the other AD's I was given. I tried Zoloft, Paxil and Prozac and some of the older tricylic AD's the latter had ugly side affects. Nefazodone was the only one I could manage with.

It could be as you said 650mg probably made the depression worse for you. I certainly am open to that possibility because we don't know all that much about the potential of what these drugs can do. Possibly you could have done with half that. The therapeutic level of Serzone is around 300mg if I am correct, you were taking twice that. Interesting you thought that, more interesting if you thougth it after you were off the drug? Many times like the episode I described with me I didn't realize until after it was over and did not make the connection to the violent behavior and the increased dosage and believe me I have read and researched this intensely. Sometimes I think my mind was numb to this drug!! But the connection came after when I did start reading more about adverse affects at raised dosages. I have been reading all your information you have been supplying and I really do appreciate it!! Thank you for being so dilligent about getting this info back to us. As they say "Knowledge is Power".

Nikky M.
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